Idiopathic intercranial hypertension??

[fafffdri12]

hi
i dont know if any one can help but I've just been diagnosed today with this.
i went to the opticians after have visual disturbances and when I bend over I go dizzy.
they said I have papilledema and sent the hospital an urgent referral. I fainted and It was so scary. the paramedics took me by ambulance to the hospital and I had a cat scan and sent home . I returned in the morning and they said I have this.

I'm back in the morning for eye clinic and then later il be having mri and lumber puncture.

I have no idea how serious this is. i have no idea what to expect. I'm just terrified that I'm going to go blind or collapse again..
is anyone able to explain how serious this is or what to expect as the doctor was very vague. thankyou x

Just found on nhs site
Idiopathic IH

In many cases, the cause of chronic IH is unclear. This is known as idiopathic IH, or sometimes benign IH.

It mainly affects women in their 20s and 30s, and has been associated with:

being overweight or obese – most cases occur in overweight women, although it's not clear why
hormone problems – such as Cushing's syndrome, hypoparathyroidism, an underactive thyroid or an overactive thyroid
certain medications – including some antibiotics, steroid medication and contraceptive pills
a lack of red blood cells (iron deficiency anaemia) or too many red blood cells (polycythaemia vera)
chronic kidney disease
lupus – a problem with the immune system
But these are only linked with idiopathic IH, they're not necessarily causes. You can find a full list of conditions and medications associated with idiopathic IH (PDF, 21kb) on the IIH UK website.

Tests for chronic IH

IH may be suspected if you have symptoms of increased pressure on your brain, such as vision problems and headaches.

Several tests may be carried out to diagnose it, such as:

an examination to check functions like your muscle strength, reflexes and balance – any issues could be a sign of a problem with your brain or nerves
an assessment of your eyes and vision
a computerised tomography (CT) scan or magnetic resonance imaging (MRI) scan of your brain
a lumbar puncture – where a needle is inserted into your spine – to check for high pressure in the fluid that surrounds your brain and spinal cord
Idiopathic IH may be diagnosed if you have increased pressure on your brain and no other cause can be found.

Hi, this must be worrying for you. I have intracranial hypertension, although from another cause. The above information is really good, but thought you might find a personal perspective helpful.

Most people will be able to manage the condition by managing their weight (if overweight), or with medications that reduce the pressure in the brain. Some people may need surgery, either to reduce swelling around the optic nerve, or to shunt the brain fluid to reduce the pressure. My neurosurgeon is planning a shunt and a different surgery, but it is a treatment that would only be done if other alternatives were not working, or the pressure was causing damage (for example, hydrocephalus or severe vision loss).

My experience is that day to day, it isn't too hard to manage, because my body has got used to the IH. I do get headaches and fatigue, but I just adjust to making sure I don't change position too quickly etc. I take topiramate for headaches and ondansetron for nausea. I also make sure that I keep active, because I feel much better when I do.

The Brain and Spine Foundation website has a helpline you can call if you need any support. They are really knowledgeable about anything neurological www.brainandspine.org.uk/supporting-you/helpline/

I know someone with this, it seems to be well managed with medication.

Hope you are able to get more information soon.

Hi OP I have this condition and was diagnosed 12 years ago . I've been on medication for 11 years and find when I come off it I do get a resurgence of symptoms. ( atm I'm having a high pressure problem due to lowering my meds)
I try to keep my weight down and when I'm having a rough patch I have to watch I don't overdo things as that makes me worse. They don't know what caused mine - possibly weight gain or hormones from pregnancy .
I had an LP to diagnose and an MRI / CTV .
Please ask me anything and I'll try to help . There's also a couple of supportive forums online .
How are you feeling now ?